Just diagnosed

[polo2014]

Hi got first appointment Friday 12 th feb what can I expect to be told about my ovarian cancer and treatments

[Spirit22]

Hi first of all sorry you have had a diagnosis of OC

Your team will have discussed the best treatment for you as a individual going forward

I expect you will have many questions even after your appointment, but please do not hesitate to ask on here any concerns or anything you do not understand . The ladies on here and Ovacome are lovely and very supportive

Good luck for your appointment on the 12th . Let us know how you get on

Best wishes Lesley

[mrstadpole]

Good luck for your appointment. Go with a list of questions .It helps to have something written down xx

[Lyndy]

Hi EvieSorry to hear that you have been diagnosed with OC . It was a bit of a whirlwind to begin with for me and I decided that I only really wanted to know what the immediate next step would be. It’s really up to you to decide.... some want to know everything, all the details, however tough. I was in the opposite camp... I have still not asked for a prognosis.

So they will probably tell you if you will have chemo first or surgery. There are standard chemo protocols for first line usually carboplatin and plaxitaxel. If it’s surgery you might want to meet your surgeon... I met mine before I knew he would be my surgeon and instinctively knew he was the one I would feel safe with.

Hopefully you will meet a nurse specialist who will be your point of contact.

Write notes if you want to, I don’t know if you can take someone to support you but you could have a partner or friend on speaker phone if they can’t be there in person. Don’t worry if you don’t take things in... there will be lots of opportunities to ask again xx

[MarleyZ]

Hi Evie Sorry you had that diagnosis, there will be alot of info though the team are pretty good giving notes, ovarian cancer books from you CNS nurse, best advice take someone with you, a level headed person who will be your second set of eyes and ears, I took my brother with me, and he was brilliant at picking up on some of the issues that were presented.

Above all trust yourself in what at the end of the day will be your decisions I wish you all the best as you take on this journey, know you are not alone loads of us on here will be with you.

[Permafrost]

so sorry its hard to take in, I tried really hard to think of all the positives in my life to help the first few months. I was diagnosed may 2019 and although its been challenging I have had some really good times so fingers crossed for you.This is my first reply but have used the sight for a couple of months

[Slipper1]

Hi Evie Sorry to read your post about your recent diagnosis, but you have come to the right place as the ovacome ladies and women with this diagnosis are brilliant. I was diagnosed in May 2020 and after the initial shock of the diagnosis, have found the support from ovacome and other ladies with OC amazing as they have helped me on this new chapter in our lives as we embark on our cancer journey.

All I would say is don't Google!, take care, we are here for you ❤

[Jacky5]

I can only echo the good advice of everybody else.There will be some ups and downs along the way but if you want advice, sympathy, to pass on good news or have a really good rant.....know that these lovely ladies will always be here to help, as I've thankfully found.

Wishing you all the very best

Liz. X

[Differentforgirls]

Hello lovely. My heart goes out to you at the start of your journey.

Advice above is great. The phone on speaker will help as you don’t always hear everything that’s being said, so another pair of ears is advised. Alternatively you could ask to record your consultation then can refer to it as necessary.

Personally, I only ask the questions when I’m ready for the possible answers.

I know your team will make a plan for what’s best for you.

It was 3 years ago yesterday I had my first op for OC followed by 18 weeks of chemo. Some have chemo before surgery & then again after. I know someone who didn’t have to have chemo & she’s still here 8 years after diagnosis.

It was a week after surgery I was confirmed with what type of OC & what stage.

I had the most common type ( Epithelial High Grade Serous stage 3b).

Your team will explain all that they can to you but it is a lot of information to take in.

Allow yourself to feel whatever you’re feeling & try to take one day at a time ( much easier said than done).

Please let us know how you get on.

Take good care of yourself xxx

[delia2]

Welcome. I think others have given excellent advice. You will want to know which type of OC you have and what stage. Also ask about testing of yourself and your tumor for BRCA mutations and other relevant gene mutations. It seems most people in the UK have three cycles of chemo then surgery then more chemo. I recommend keeping a journal with how you feel each day when you’re on chemo. It’s kind of early to bring this up but constipation is a frequent problem after surgery and from pain and anti nausea meds during chemo. Stay on top of it! I hope everything goes well. Xx

[Summergold2]

Evie so sorry to hear of your diagnosis........all the advice you have been given above is wonderful I wish I had this site when I was first diagnosed. The only thing I can think of is ask if they can save part of the tumor during surgery and have it stored. Don't know if that is possible ....... they saved part of my tumor and I am in an experimental study that has created a vaccine from my particular tumor and they inject it into me. it is experimental and I am hoping this will help kick those cancer fighting T cells into recognizing and destroy the remaining cell or if it starts to grow. Cutting edge stuff I think but hoping an answer can be found. Let us all know how you are doing and hang tough you have a lot of resources here on this site and from your doctors.

[Pianoplayer731021]

Hi Evie, all of us on here will be thinking of you. We wish you well on your journey. Prayers and hugs, Donna